Let’s talk meds again

You know, I honestly thought that the ‘you must show ID to get your meds’ thing had gone out, because I went for a month without being asked, and having literally no issues at all in getting it.

 

Then, last week, on the way to the show, I was asked to show ID. The pharmacist acted strangely, staring at me from the back, and making motions to come out from the back, except she didn’t, and I got my meds and went on my way. Then, after I had to stand in line for three and a half hours, I was grateful to not rely on the single dose I had left to get through the night. Trust me, standing on various configurations of pee-stained paving, cement and lino-covered-cement for that long, while wearing a corset that still doesn’t fit right because it was broken in before the IUD-induced breast explosion, and therefore doesn’t give quite the support it used to? Yeah. I still haven’t recovered.

 

So I had class today, and class is generally my standard point of ‘get meds’. Today, my regular pharmacy had run out of everything but the 12-pack. Now, let’s be real, in my current condition, with everything that I need to be functional for, that’s a day’s worth. If I’m lucky, it’s a day and a half, in between the parts where I make it a whole eleven hours before passing out for six, because the pain overwhelms everything and then I have to deal with the consequences of passing out on carpet-covered-cement, and the occasional ‘oh wow it’s been four and a half hours since i took it!’ generally involving either lost time or ‘yeah, i can’t stand up right now’. Now, I have half a packet still at home, so it will get me through until the next time I leave the house, because apparently, even though shows are a disaster and I swore them off, my presence at concerts my friend is in (my only RL friend! wow!) is still mandatory, so I have to go out on Friday. I can get to Friday.

 

So, with my insurance comes a discount membership for Other Pharmacy. I stopped going to Other Pharmacy a while ago, because their terrible service involves overcharging for bandages (three small packets and one big packet? sure, let’s scan four big packets!), denying medication if you are purchasing a pregnancy test at the same time (it might hurt your baby! even though you’re infertile and it’s not for you!), and my personal least favourite: ‘we’re open every day so you can just come back when you run out’ rather than letting an adult manage their own OTC medication (and yes, we are talking about what is legally OTC medication).

But today, I braved it, because if I could get another packet, then I could go straight to the show on Friday, straight home, and get through to Monday. I’m a huge fan of forward planning and minimising times when I have to get a corset and get the car out and go to places where I get treated like less than a person. I also prefer to have a spare packet for days when I run out but I’m not capable of going out, which if I had another packet, I could put the 12-pack aside for.

So I chose a thermometer, because mine is old and this was given to me before digital thermometers came with replaceable batteries, and tracking my temperature on migraine days allows me to manage them better, and went to the counter with my note (remember, I can’t talk or write, but I can hear mostly fine, if I can see you and know you’re talking). The assistant took my note, took my id, entered it into the computer, and then said ‘Are you waiting? Will you wait there? Wait there?’, which was weird to me, because the pharmacist literally had just told her it was okay to give them to me and to put it in the computer. So I waited. Right there. Leaning on the counter, so my back wouldn’t hurt quite so much, and I could play on the table with my fingers, which I never noticed I do before recently and now it’s like all the time (yes, I’m probably autistic, I was tested in school but nobody told me the results, so all I know is that I got special assistance and skipped a grade). Eventually, someone else came out, and said they wouldn’t give them to me, because “you’ve been taking them a lot” and “you had some last week”. She pointed off to the side and wanted me to go with her somewhere.  I just kept signing over and over “I have a migraine I can’t talk”. She wrote down “has been too soon cannot dispense” and shoved the paper with me at a pen. I wrote back, “have migraine need now”, which obviously looked like chicken scratch. She went to the back and got the original pharmacist. “She’s stupid, doesn’t understand the message,” she said. The other pharmacist came out. I signed again. “Yes, I know you can’t hear, honey,” she said. “We can’t give it to you. You can have this instead. We need a letter from your doctor.” I tried to write that I have seen a doctor, but they didn’t understand. The other lady had retrieved a packet of Maxigesic, which is paracetamol + ibuprofen. I signed that I am allergic to paracetamol. They still tried to make me take it. I handed them the thermometer. “No, you pay at the front,” she said, and tried to hand it back. I ended up shaking and crying on the floor. Not a single person asked if I was alright.

 

Eventually I made it across the road, to Historically Really Nice To Me Pharmacy. The assistant there took my note and brought back the pharmacist, rinse, repeat. The best she could do was a 12-pack, and she would note on the system that she had recommended I see a doctor. I had to turn off my music and type to her on my phone, because she was “can you write? is there someone to speak for you? i can’t understand you”, and so the ambient noise was prickling at my spine, sending spider-spikes up into my brain. My mp3 player died over the weekend, because when you’re dissociated and have a migraine and are in so much pain that you pass out rather than feel it, you do stupid shit like put your mp3 player in the washing machine.

Eventually, even though I did my best to explain that my doctor assumes that as an adult I’m actually capable of managing my own medication (and indeed, if not for being sent home from hospital after surgery without safe pain medication, and having to deal with my body rapidly changing, therefore causing more pain… I would still be at the one packet  a week I was before, rather than the 3 I am now, which is actually an improvement on what it was), and they don’t prescribe it anyway as it’s an opioid and, therefore, addictive (even when a specialist tells them to, actually – I have tried, trust me, because it would be so much easier to have people believe I take it for pain if it was prescribed, and prescriptions require less talking). “They will prescribe it to you,” she said. “Or a letter. A letter is fine.” Because if I took in a letter, they would totally believe I didn’t write it myself.

But she was also on about “you had some last week, that shouldn’t have run out yet”. Let’s do the math, though – 6 tablets a day x 5 days = 30 tablets. Wednesday to Tuesday is 6 days. I have had pharmacists advise me to take it for 3 days, take a day off, then take it for 3 days. In no way, therefore, is 6 days “too soon” – it’s right on the “will need to start new one tomorrow” line. And I snapped

‘what record? i no consent record’ i typed.

“The pharmacists should have explained to you that it’s recorded on a nationwide system,” she said. “Didn’t they do that?”

No, no they did not. Until today, I have had no confirmation from any pharmacist that the database is actually a thing, that they’re recording my activities and sharing it.

“Every time you show ID, we record it on the system. It’s anonymised, so we only do it from your license number.”

‘I no consent. Plese delete.’ I typed

But she couldn’t delete my record. She could only delete that day, from that pharmacy. I’m not allowed to access my record, either, even though it’s mine, because anonymising it means I can’t prove it’s mine. Or something. And, of course, if she deleted it, she wouldn’t even give me the 12-pack.

 

I took my ID back and went to class. I sat down in the waiting room, and even though I was wearing makeup, I really did cry. I vented to my mum and on Facebook, because this is wrong. I have a medical team and the right to make my own decisions based on their advice. A pharmacist shouldn’t be able to make judgments based on only a computer, nor on their limited grasp of the facts. No matter what anyone says, I am not an addict, the same way needing heart medication doesn’t mean my dad is an addict, or needing insulin doesn’t make a diabetic an addict. If I wasn’t in pain that routinely affects my ability to function, through making it far too painful to stand, to making my head feel like I’m wearing a bubble with crushing air pressure, to being unable to urinate, to not even being able to knit or type, to not be able to stand or bend or sit then I wouldn’t need pain medication. Except I am, and I do. Funny thing, knee pain – they just decided surgery doesn’t work, and they recommend pain medication as needed. …

 

So Friday will be interesting.

 

So then I get to class, and I explain that my mouth hasn’t been working properly and I bit a hole in my lip instead of my food.

“You know, you say you have trouble and all that, but you’re fine in here.”

Because, you know, half an hour before, I take my meds, I meditate, and the rest of the week I spend resting because all my energy has to go into being in there, and not being harassed. It’s always something – my clothes, my hair (I always wear it up now, because the receptionist cornered me in the classroom and said she wanted to get me drunk so she could play with it. I doubt having a bun helps when I say I have a migraine, but having a braid on my spine is worse) my shoes, my makeup. If I don’t have a panic attack beforehand, I’m dissociated, or I’m so stressed that I go into survival mode, and my brain thinks I still have to pass, and then coming down from that is like subdrop amplified.

“Why weren’t you at the show on Sunday?”

Because Wednesday was terrible. Because I went out on Saturday to take photos of the knitting exhibit at the Show and a volunteer there prevented me leaving until she could tell me off for having an ankle brace. Because my mp3 player was dead and my phone is not the best substitute. Because it was at the venue where I once reserved a table and they gave it to someone else, and the tables are behind the standing area, so I wasn’t able to see the show. Because I was asked to be in the show and then not allowed to be in it because “it’s too hard for you with your condition”. Because I had to choose between being there and being here. Because asking me to get somewhere at 11am on a Sunday means I ahve to skip an entire night of sleep, and I still haven’t adjusted back from the psych-eval-that-wasn’t.

 

I’m starting to suspect, if I could just be left alone for a while, no doctors, no class, that things would be much better. As it is, though, there are so many people with their idea of what ‘recovery’ and ‘functioning’ look like, ideas which differ so radically, that I don’t have room to actually plot a path that satisfies everyone, is within my ability and finances, and doesn’t come with the very awkward squarely-on-a-trigger concept of ‘if you do not meet our standards you do not get paid’, because that’s how disability and workers comp work. As it is, there’s so much pressure, so many external standards, that there’s no flexibility. I can’t go get meds and have three packs so that I can stay home for a week and actually rest, so I have to actively alter my sleep cycle, which means more pain (seriously, this is a thing), just so I can get meds for the pain so that I can go to the psychiatrist and get yelled at for whatever thing I haven’t done right/enough “but [he] find[s] that people know what they need”. I don’t need to talk. I don’t need email. I need a job that lets me work flexibly from home at night for a few hours a week, which doesn’t exist. I need to have a decision on DSP. I don’t need to be harassed about my medication or be sent to allergy testing for being vegan. I need to not have to be on Facebook every day and to not be harassed if I am not online ‘enough’, whatever that means. Human beans can survive without internet, without phones. I don’t know why everyone else didn’t learn to fingerspell in kindergarten, but not being called stupid for not talking would help, as would not assuming I can’t hear being called stupid because I can’t talk. Touching isn’t necessary either; it should be optional by default.

 

On the plus side, I received a very apologetic email from the ABS last week, with the correct census link, and a promise that I won’t be fined (which, well, it’s still within the window to fill it out, but now I have it in writing, in case that man comes back and tries, I spose). So now I exist again, as a genderfluid disabled person who identifies as Irish Catholic, speaks Greek at home (which is actually true, not trolling, except for the part where I suppose speaking implies actually talking…), does not work due to long-term disability, and needs assistance. All that for a five minute questionnaire, which would probably have been more functional on SurveyMonkey.

And my new mp3 player arrived today. I don’t have money to buy food with, because to get one with buttons rather than that wheel thing which is impossible for me to use because, you know, it requires seeing and fine motor control and stuff like that (I did actually have the use of an early iPod, so I know this), cost an entire fortnight’s ‘allowance’. It’s a necessity, because ambient noise and sound and anxiety, but I don’t know when I’ll buy groceries again. Or, like, anything else, apparently. Did you know that the price of OTC meds varies depending on how far you are from the CBD? The 12-pack today cost the same as the 30-pack yesterday. How stupid is that? I wonder, if by some miracle, I do manage a prescription, whether it would come down.

 

(For the record, if you put Sennheiser CX300-II headphones through the washing machine, they will still work. I already adore Sennheiser and all, but that is amazing to me.)

 

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